Lisa Bonchek Adams has Stage IV breast cancer and has been documenting her experience dealing with the disease. She’s tweeting and blogging, sharing the ups and downs, giving her readers a taste of her current life situation.
No big deal, eh? A person writes. Other people can read.
Well, everything changed this week when journalists Bill and Emma Keller decided they didn’t like Lisa’s tweets.
The brouhaha began when Mrs. Keller wrote this:
Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it’s metastasized to her bones, joints, hips, spine, liver and lungs. She’s in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.
“Dying out loud.” I’m not sure I’d describe Lisa’s activity as such, but to each their own…
Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest?
Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a “no visitors sign” on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?
From Mr. Keller:
In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.
Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.
Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.
Now… as someone who has intimate knowledge of this whole cancer thing, I suppose I have a tiny opinion on this situation:
Nobody should tell Lisa how to deal with her cancer. Period.
If she wants to tweet, let her tweet in peace.
I’ve discovered there is a TON of misinformation about cancer floating around the Internet. For Lisa to peel away some of the mystery is likely a good thing. After my diagnosis, I searched high and low for even one tiny, reliable shred of usable, readable information and what I found was a ton of quackery.
I found a dude named Chris who used a crazy raw food diet to beat his colon cancer (funny thing is that he had surgery to remove a good portion of his large intestine after his diagnosis). I found a woman named Chris whose diet consists of all organic plant foods who “stopped” her cancer in its tracks. Only thing is she has a super-stable version of her cancer that likely won’t do anything for at least 15 years. Of course, both of these people are selling “make your body cancer-proof” information.
Then I found a woman named Jan who is raising money to pay for her alternative cancer treatment. Updates are sparse and discouraging. I have a hunch her blog will simply disappear.
Personally, I decided to not write about my cancer much. It’s simply too overwhelming. I can’t seem to put into words the incredible mind f*ck this disease is.
Which brings me back to Lisa. A part of me mourns that a large portion of our world can’t seem to handle the rougher realities of life. Another part of me gives her a tremendous high five for demystifying her treatment. I’m thrilled people are talking about this, perhaps quietly deciding what they’d do if/when they find themselves in a similar situation.
Either way, the decision as to whether she tweets, blogs, and Facebooks should be hers and hers alone. That said, Kellers are certainly welcome to their opinion. However, if they don’t like her tweets, perhaps they should remove themselves from her feed rather than make a difficult situation even worse.